Physically Active Childhoods for Children with Congenital Heart Defects

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1 Physically Active Childhoods for Children with Congenital Heart Defects Pat Longmuir PhD Candidate Sick Kids U of Toronto - IMS Supervisor: Dr. Brian McCrindle Sick Kids Cardiology/Child Health U of Toronto

2 Active Lifestyles are Critically Important Essential for: Lifelong heart health Childhood quality of life Childhood interactions with peers Childhood growth and development

3 Quality of Life Children are surviving! Mortality is very low Children are thriving? Morbidity is greatly reduced Cardiac cripple phenomenon MD s encourage full lifestyle

4 Existing Cardiac Literature Normal or near-normal exercise capacity for repaired defects 41 ± ± 26 Hovels Gurich et al, 2006

5 Existing Cardiac Literature Decreased exercise capacity for palliated defects Exercise p<.001 Zajac et al, 2002 Resting p>.20

6 Existing Cardiac Literature Exercise capacity improves with training palliation or repair Trained Control Rhodes et al, 2006

7 Existing Cardiac McCrindle et al, 2006 Healthy Literature Minimum for health Decreased daily physical activity Relative to healthy peers Relative to recommended values

8 Univentricular Heart Congenital heart defect Left, right or both ventricles Transplant or palliative surgery

9 Fontan Surgery Venous return directly to lungs Single ventricle for systemic circulation Two or more operations by 3 years of age

10 Existing Fontan Literature Exercise capacity related to parent reports of: global health physical function limitations and their impact general behaviour problems general health perceptions Exercise capacity related to adolescent reports of: activity limitations friendship concerns symptom concerns career concerns McCrindle et al, 2007

11 Existing Fontan Literature Exercise capacity but not activity related to heart function / health status (McCrindle et al, 2007) Mitchell et al, 2006 >85% of parents report no activity limits

12 What s not known? What factors influence physical activity participation? Can physical activity be increased with an intervention?

13 Identifying Determinants and Optimizing Rehabilitation for Children after the Fontan Procedure PI: B. McCrindle Co-I: J.L. Russell, R. Sananes, P.E. Longmuir PhD Advisors: M. Corey, G. Faulkner, B. Antle

14 Subjects Males and females 6 to 11 years Successful Fontan surgery at least one year prior Sufficient cardiac function for safe participation in physical activity No other disabilities/medical conditions

15 Study Design Randomized, prospective clinical trial Census sample of all children meeting inclusion criteria Two intervention groups, no control Assessment staff blind to group allocation

16 Quantitative Assessments Moderate/Vigorous physical activity accelerometer Adequacy and predilection for activity CSAPPA Scale

17 Quantitative Assessments Gross motor skill Test of Gross Motor Development Version 2 Health-related fitness Canadian Health Measures Survey

18 Quantitative Assessments Child s activity attitudes and self concept interview questions combination of existing instruments Parent perceptions of activity questionnaire combination of existing instruments

19 Qualitative Assessments Child interviews self perceptions, beliefs and attitudes about activity Parent interviews perceptions and beliefs about child s activity

20 Interventions Home based, self-administered One year, 1 to 2 hours per week Regular contact with staff Individualized to child s interests Education or exercise

21 Existing Activity Literature Practice Support Self Esteem Emotions Development Gross Positive Perception Expect Experience Parent Transport Move Motor Ability Skill Experience Outcome Success Encouragement Support Play with

22 Assumptions - Medical Children will naturally be active if able Children with univentricular hearts are: Limited in maximal cardiac function Potentially medically fragile Potentially at risk for arrhythmia Potentially limited in lung function Limited in exercise capacity Limited in ability to be active

23 Assumptions - Parental Children with univentricular hearts: Have limited heart function Have limited exercise capacity Get easily out of breath or blue Are at risk for sudden death or collapse May put too much strain on their heart with strenuous exercise and activity

24 Model for Children with Fontan Practice Support Self Esteem Emotions Development Gross Positive Perception Expect Experience Parent Transport Move Motor Ability Skill Experience Outcome Success Encouragement Support Play with

25 Experience Success Support Positive Expect Practice Gross Play with Emotions Parent Transport Support Development Move Motor Ability Skill Perception Experience Outcome Self Esteem Encouragement Exercise / Activity Intervention

26 Stages of Change Prochaska & DiClemente, 1992 Pre-contemplation, Contemplation, Preparation, Action, Maintenance Apply to parent/child readiness for physical activity Education intervention tailored to parent/child stage of change

27 Experience Success Encouragement Expect Support Positive Practice Gross Play with Emotions Parent Transport Support Development Move Motor Ability Skill Perception Experience Outcome Self Esteem Education Pre-Cont & Cont

28 Education Prepare & Act Experience Success Practice Gross Transport Parent Play with Support Support Development Positive Perception Encouragement Move Motor Ability Experience Outcome Expect Self Esteem Emotions Skill

29 Outcomes Four assessments (pre, 6 month, post, 1 year post) Cardiac function from medical history Primary outcome - change from baseline in daily activity

30 Data Analyses Quantitative Variables - regression analyses - correlations - modeling Qualitative Variables - thematic coding - situational mapping

31 Data Preparation Average weekly activity: [weekday x 5] + [weekend x 2] Normative percentiles for: gross motor skill treadmill Raw scores for health related fitness (CHMS norms not yet available)

32 Results Below expected values for: Exercise capacity Health-related fitness Gross motor skill

33 Results Daily activity NOT related to: Gender Diagnosis or medical history Maximal exercise capacity Health-related fitness Parent activity involvement/support

34 Results - Quantitative Daily activity increases with: Lower age at test Lower age at Fontan Better gross motor skill Antithrombotic medication Positive attitude/self efficacy

35

36 Implications Activity adequacy/perception related to gross motor skill Parent/child perceptions and fears are critically important Information from health professionals (or lack thereof) can have significant, life-long implications

37 Implications of MD Comments I I remember the doctor telling me how they had to literally peel her heart off the breastbone, so it s right there which is why I don t want her to play soccer While on coumadin,, she had some kidney bleeding after going tubing behind a motorboat, when they stopped her coumadin the doctor said Now you can go tubing

38 Next Steps Complete the interventions April 2008 Determine the intervention impact Changes over time Differences between groups Complete the 1-yr post intervention measures

39 Next Steps Changes to clinical practice Address uncertainty Decrease fear/apprehension Investigate other diagnostic groups With/without surgery Repaired/palliated

40 Future Research Questions Investigate sources of anxiety/fear Direct observation? Monitoring from first contact? Interviews?

41 Future Research Questions Evaluate earlier interventions Time of diagnosis? Time of surgery? When status/treatment changes?

42 Future Research Questions Children with other health conditions or disabilities Health-related activity or exercise Presence of anxiety/fear/uncertainty

43 Future Research Questions Neurodevelopmental deficits Visual/perceptual-motor at birth Learning disabilities later Spatial-motor intervention? Anxiety/fear at 9-10 years Enhance support in adjusting to comprehension of future?

44 Thank You! Comments?

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